What’s the access to my house like? Rubbish. And here’s too much information about how it is in the house, too…in which I discuss adaptations and equipment, transfers and coping strategies

I am in a wheelchair, but live in a very inaccessible home.

The access to my home is up a 1:4 gradient on a pedestrianised hill. The closest to my gate a vehicle can park is 80 metres. I’ve always enjoyed this- the neighbours are friendly, I have a garden extension in the street, there’s less traffic noise and pollution.

But it’s a nightmare now. I can’t safely propel a chair up or down the street, so am dependent on others who are strong enough to manage to keep control of the chair on the way down, or push me allthe way up. When I get to my gate, I have to get out of the chair onto crutches, because the step into the yard is not accessible in the chair. Once across the yard, I then have 4 very steep steps up to the threshold of the house.It’s simplest to crutch my self from the gate straight into the house, if someone can open the door. I can then perch on the arm of the sofa to get my breath back.

My house is err…let’s say “compact”! It means that once in it, it’s very difficult to move about in the chair- luckily, everything on the ground floor is close enough to be crutched to, so I tend to leave the chair folded up near the door for the next time I’m going out. I move from the sofa, where I have the choice of sitting or side lying, to the dining chair, and can crutch into the kitchen in my fetching velcro girdle to make a drink or some food. I can stand briefly in the girdle- for perhaps 10 minutes, before the pain gets on top of me, and I have to go back to the dining chair or the sofa.

I can use my computer side lying on the sofa- hence I’m trying to use blogging, twitter etc to deal with the lack of other activities. I can sit briefly at my dining table, but can only sit for an hour before the pressure on my pelvis becomes uncomfortable. I find it is a cumulative process- once I’ve had my hour or two in total sitting in a day, it’s side lying only for the rest of the day.

I am limiting the number of times in a day I go up and down the stairs, which I do by hanging on the bannister and using the crutch in the other hand. Or, at the end of the day, I go up on my bottom (sobbing from pain optional). I have no need to go upstairs during the day except to use the bathroom, or if I have totally given in and am retiring to bed. Mostly, I avoid going up to the bathroom by using a urinal which I can use and store in the kitchen until my partner gets home. It’s the most humiliating part of this situation, that this has become an unspoken agreement between us- that if he finds it has been used he discreetly empties it and disinfects it.

When I’m upstairs, I need help to get in and out of the bath. I use my OT skills to talk myself through the transfer- I don’t use a bath seat because I prefer not to have adaptive equipment in the bathroom where my toddler could be tempted to use/misuse it. I can’t reach into the bath to put the plug into the hole- my partner tend to run the bath for me before I go upstairs. To get in, I sit on the bottom corner of the bath, get both legs on to the side of the bath whilst being steadied by my partner, then get legs into the bath. I then edge across the bath ’til I’m centralised, and lower myself down on my arms. I have strong arms- which I am now incredibly grateful for! Getting out is the reverse process. Needless to say, I am unable to use the bath or shower if I’m in the house alone, since I am unable to guarantee my safety doing any of this….there’s always the possibility of needing to be physically manhandled out.

I avoid using a raised toilet seat because getting my toddler to retain her independance in toileting is very important to me. This would be very difficult for her if the toilet had a raised seat. I lower myself down gingerly, and use pressure on the crutch handle in front, and a hand behind on the toilet seat, to get back up.

Getting in and out of bed is far easier since I had a bedstick installed. This is a chrome handle at the side of my bed, which I can use to help lower me down or raise myself up. To get into bed, I sit on the bed, grab the bedstick, then simultaneously lower down top half whilst raising legs (keeping legs together), with knees bent, onto bed. Getting out of bed, or into upright in order to take painkillers is the reverse.

Once I’m in bed, due to being 7 months pregnant I lie with a long pillow alongside me. This goes between my knees and ankles, keeping my legs at the correct angle to my pelvis, and also goes underneath my bump to support my back. I can then hug the top of it (again, sobbing optional).

I then put on my splints- did I forget to mention? Another pregnancy complication- I now have carpel tunnel syndrome in both hands and have fetching splints (velco and fabric) to be applied to keep my hand and wrist in neutral whilst sleeping- which helps the fluid drain out and reduce the pain and tingling in my hands. I would upload a picture, but I am sure the mental picture you have is more fetching!

All pregnant ladies go to the toilet several times during the night, especially when they get so big the baby is pressing on the bladder. I’m able to utilise my urinal in the night to avoid this- but unforunately I am still having difficulty getting over my socialisation that you do not release urine over a carpet, nor in the bedroom, nor when sat on the side of the bed next to a sleeping partner. But I’m getting there. It definetely reduces the pain I feel in the morning, when I’m waiting for the first painkillers of the day to kick in, if I have gone through the night without crutching to the bathroom.

A final point- part of the pelvic thing that’s going on. When I either get from lying to sitting or turn over in bed, the bones in my pelvis grind against each other, and “crack”. This is an unexpectedly loud noise, which can wake sleeping partners. It arrives quicker than the pain, which follows speedily after…. but as any Pavlovian conditioned animal will inform you, I only have to hear the crack in the middle of the night to start crying. So far, I haven’t been disappointed by the pain, when it arrives.

So if you find I am grumpy when you come round, and find the house messier than it usually is, or if I ask you to make us both a cup of tea, please understand it’s because this process is difficult, embarrassing, painful and unremitting.

I’m really glad you dropped by for a chat.

What have you been up to today?

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2 Comments

  1. Hello! Nice blog. Black coffee, please, rather than tea. Do I take sugar? I’m never sure.

    Reply
  2. Hey Claire from another Claire (spelt the same way!) aka crpitt on twitter.

    Firstly I have really enjoyed reading the blog posts so far, well if enjoy is the right word for it.

    I think blogging about what you are going through is a great way to get through this time, especially as you have to spend a lot of time laying down. You have certainly got the knack for blogging and I hope you write lots more. It will be really interesting to see how this blog evolves once you have had the baby and eventually go back to work, I wonder how all this will influence your work?

    As the situation is temporary it must be really difficult, like floating between two worlds. As you can’t actually do anything too drastic to the house, as it would all have to be undone again once you are out of the chair. I know before the mum had her leg off and we thought she would actually get better, a lot of things were put off. That came back to bite us on the arse and we are still trying to sort out a bathroom for the mum downstairs, which has been a nightmare.

    Bathroom time and urinals is definitely difficult to get use to, but soon it just becomes an unspoken thing.

    I think you more than deserve a grumpy day and if people are looking at the state of the house instead of being concerned about you, then that says more about them! (they are sods!) 🙂

    Keep writing, I will definitely keep reading 🙂

    Reply

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